ABSTRACTS

Science, Technologies and Deafness:
An Introduction to Organized Knowledge as Social Problem

The introduction to this volume connects the burgeoning academic field of
science and technology studies (STS) with studies into the technologies of
deafness; examples of such technologies include genomics, cochlear implantation,
sign language corpora, educational tracking systems, and mobile communications.
The subsequent articles all bear witness to the extensive interweaving of
advanced technologies, scientific knowledge, deafness and sign language. The
papers brought together in this special issue were presented at two prominent
international conferences: the annual meeting called “Ways of Knowing” held by
the Society for Social Studies of Science (4S), in Montreal from October 11–13,
2007; and the annual meeting called “Acting with Science, Technology and
Medicine,” held jointly by 4S and the European Association for the Study of
Science and Technology (EASST) in Rotterdam from August 20–23, 2008.

Whose Deaf Genes Are They Anyway? The
Deaf Community’s Challenge to Legislation on Embryo Selection

This article centers on the implications of genetic developments (as a
scientific and technological discipline) for those Deaf people who identify as a
cultural and linguistic minority group and are concerned with the preservation
and development of sign language and Deaf culture. We explore the impact of one
particular legislative initiative that is liable to directly affect the
reproductive liberty of Deaf people in the UK. In particular, we document the
challenge that was instigated by the international Deaf community toward this
clause. Before outlining the item of legislation that renewed debate on this
topic in the UK, we briefly review the current availability of genetic
technologies pertaining to deafness. We then summarize the nature of the
opposition to this initiative and describe the steps taken to campaign against
it and discuss the prospects such legislation raises for Deaf people. We
conclude by reviewing the outcome in terms of the landscape that remains
following this matter.

In brief, our context is as follows. The United Kingdom’s Human Fertilisation
and Embryology Act (2008) contains a clause in it that (as originally written)
sought to prevent people from choosing to keep certain embryos—including those
with characteristics pertaining to deafness—when using assisted reproduction
techniques. Within the UK Deaf community, this clause not only fueled ongoing
fears that this technology was ultimately aimed at preventing the birth of deaf
people but also raised an alarm that politicians could—openly and largely
without challenge—revive the implication that deaf people are generally
unwanted. Our article therefore looks at how genetic technologies have been seen
to pose a severe risk to the future of the Deaf community and how the Deaf
public and its allies have attempted to generate and participate in public
debate on the issue.

Views, Knowledge, and Beliefs about
Genetics and Genetic Counseling among Deaf People

Genetic counseling is part of the social response to the science of genetics. It
is intended to help twenty-first-century societies manage the consequences of
our ability to observe and intervene in our genetic makeup. This article
explores the views, knowledge, and beliefs of some Deaf and hard of hearing
people about genetics and genetic counseling. Deaf adults are often interested
in knowing why they are deaf and whether deafness can be passed on to their
children. They may also be interested in knowing about other traits in their
family (e.g., inherited cancer). These issues are routinely addressed within the
health service of genetic counseling as offered by clinical geneticists and
genetic counselors. However, in the United Kingdom, very few Deaf and hard of
hearing adults either seek out a referral for genetic counseling or utilize this
clinical service.

There are many complex reasons for this, within this article we focus on what
deaf people think genetic counseling is and how they feel about new discoveries
in genetics. The data have been gathered via a structured questionnaire
completed by 573 Deaf and hard of hearing people, with additional information
gathered via the free-text comments provided in the questionnaires. A Deaf
researcher also completed thirty interviews with Deaf participants in British
Sign Language. The participants in the study sample were recruited from the
readership of two magazines for Deaf and hard of hearing people in the UK.

Our results show that 50 percent of the participants indicated they knew what
genetic counseling was before they read the questionnaire, but 80 percent did
not know how to get such counseling. We conclude that, in order for Deaf and
hard of hearing people to make an informed choice about whether they wish to
access genetic counseling services, they need to internalize accurate
information about what services are available to them. This article shows that
the benefits of genetic technologies are by no means unquestioned in our
societies.

This article discusses the role of technology in supporting ASL literacy. This
attention to technology is part of an exploratory study of Deaf elementary
school students participating in an ASL identity text project at a
bilingual/bicultural school for Deaf students in Ontario, Canada. This study is
a contribution to the cross-Canada Multiliteracies project, which proposes a new
approach to literacy pedagogy that also includes an increased attention to
technological applications. The Ontario ASL curriculum and its use of ASL
technology are also elements of this exploratory study.

Acting with Attainment Technologies in
Deaf Education: Reinventing Monitoring as an Intervention Collaboratory

In this article I consider that attainment research is a knowledge-producing
practice that co-creates the realities it studies. Studies aimed at monitoring
pupils’ educational progress tend to collect those data that are needed to
develop research claims, thereby producing an expert catalogue of understanding
that is variable and has limited potential for integrating with educational
practice. I propose that monitoring could alternatively be reinvented as an
interventionist collaboratory, one that engages new technologies for the purpose
of merging understanding with doing. Central to that effort should be a broad
conception of (e-)literacy as a key social and cultural competence.

The Use of Modern Information and
Communication Systems and Technology and Experienced Stress at Work in Mixed
Deaf-Hearing Teams

In this article we look at the use of ICST in two multilingual and deaf/hearing
teams in an educational and research environment. We describe how job demands
and job control (decision authority level) contribute to feelings of stress
among the deaf and the hearing employees. We find that most information is
received by all of the team members in writtten Dutch, as well as through the
intranet and e-mail, but deaf employees predominantly rely on each other for
informal information. Most of the employees feel that they are in control at
work and that they fulfill the job demands. A multiple-regression analysis shows
that experienced stress is lower as people have more control over their work and
as they use Dutch as their first language at work. Experienced stress clearly
increases with an experienced increase in job demands. When other factors are
kept constant, deafness as such does not contribute to stress.

Medical Signbank: Bringing Deaf People
and Linguists Together in the Process of Language Development

In this article we describe an Australian project in which linguists, signed
language interpreters, medical and health care professionals, and members of the
Deaf community use the technology of the Internet to facilitate cooperative
language development. A web-based, interactive multimedia lexicon, an
encyclopedic dictionary, and a database of Australian Sign Language (Auslan) are
being used to create an effective, accepted, and shared sign language vocabulary
for the discussion of medical and mental health issues by deaf clients and
health professionals in interactions mediated by Auslan interpreters. The site,
called Medical Signbank, is a means of monitoring Auslan vocabulary use and
innovation by interpreters and of providing an explanation of basic medical and
mental health terminology to deaf people with limited English or literacy
skills. Medical Signbank will use the interactive capabilities of the Internet
to turn the tables on language planning and standardization—from “top down” to
“bottom up”—and, by so doing, encourage an organic and more natural process of
language development.

What Does ‘Informed Consent’ Mean in
the Internet Age? Publishing Sign Language Corpora as Open Content

Recent technologies in the area of video and Internet are allowing the creation
and online publication of large signed language corpora. Primarily addressing
the needs of linguists and other researchers, because of their unique character
in history these data collections are also made accessible online for a general
audience. This “open access” publication may benefit the language communities
from which the recordings stem, yet they also raise some ethical concerns. In
particular, informed consent is hard to obtain if, due to future technological
developments, the consequences of online publication cannot be foreseen. While
this problem cannot be resolved, in this article I propose that the benefits of
open access publication outweigh the possible objections. The first-time
availability of large-scale language resources to not only researchers but also
members of the deaf communities that are involved opens up a new era for sign
language studies, and has a potential political effect that should not be
underestimated.